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It's been rough

Twinzma
Posts: 207
Joined: Jan 2018

Wow since my last post, Jim has fallen very ill! The Strivaga was approved and it arrived, still haven't heard from the new cancer Center either. He was feeling really weak and winded last week and was hopeful that the Iron Infusion and B-12 he had scheduled would help. I was sleeping on the couch Sunday night and in the wee hours I saw the lights come on in the bedroom. I went in and he informed me he was not going to work and he needed me to call his doctor. After 2 calls and several hours later he was getting worse extremely short of breath and felt feverish I took his temp it was 102.4 so I packed him in the car and we went to the ER. 

He was admitted for Sepsis and critically low hemoglobin's. He has received 2 blood transfusions is on IV antibiotics and looks like a new man! He couldn't walk to the toilet before he went in and did 4 laps around the hospital this afternoon. His appetite still stinks but with all the meds being pumped into him I don't blame him for not wanting to eat. 

He has just about had enough of his doctor alas! We don't know where the bleed is and she is dismissive. Call me crazy but the man has ulcers is taking strong drugs I think he should have an EDG to make sure that it is not the ulcers that have been causing him to have black tarry stools. Maybe I am just blinded by the fact that that is what killed my father, but it irks me that she is not being more proactive and is ready to discharge him from the hospital! She says it could be the chemo (he only had 2 pills) or it could be the tumor bleeding and that's that. Also, I am still so ticked that I called her after hours line twice and she couldn't be bothered to pick up the phone to call us! Why bother having an answering service if you don't return the calls? I stressed he is Short of Breath what more could I have said to light the fire? Even Jim is disgusted and said it's time for a change of doctors! I have only been saying that since diagnosis! But I don't dare say it to him! 

The only thing keeping him in there tonight is the Infectious disease doctor, she want's to be certain is not his port and won't release him until the cultures come back. I am glad she is at least proactive and concerned! I feel much more comfortable with him being in for at least one more night. Of course he is ready to go back to work and called his office to tell them he will be in on Friday! 

I am so sorry everyone that I am not as active here as I once was and seem to only be posting when there is another bump in the road. I really want to be supportive to all of you too as you have with me. I am just so tired and out of sorts these last few weeks and I just don't have it in me most days anymore. I am also going back to therapy soon BTW....I think that anxiety and depression are getting the best of me lately so there is that too. Ugh this roller coaster SUCKS!!! 

 

 

suzycruise76's picture
suzycruise76
Posts: 76
Joined: Mar 2019

couldn't the tar black stool be because he got the iron infusion? When I was on an iron medication,my stool was just like that,but my doctor had informed me about it before I started taking it,otherwise I would sure be shocked! Just check it out with his doctors to be sure.

All the best to you and your husband,

Suzy

Twinzma
Posts: 207
Joined: Jan 2018

He presented with Black Tarry stools before the Iron began (they started that in the hospital last night he nevr got it outpatient) and the fecal occot tests were positive for blood. His Hemoglbin was low last week had went from 12.5 to 7.8 in 7 days then was 6.2 on Monday morning. Definatley a bleed somewhere she said it is possible that it is the tumor that is bleeding. Which of course I know could very well be, but dark usually means higher up the track ant least that's what I have always been told and what led me to my fathers bleeding ulcer. Jim has confimed multiple large ulcers and upper gastic pain....I am really floored that she wouldn't even call in a GI consut despite our requests! 

 

 

beaumontdave's picture
beaumontdave
Posts: 977
Joined: Aug 2013

I don't see why they wouldn't scope him either. My red cell count dropped some, still in the normal range, and I'm getting scoped both ways today, just to have a look. All other numbers are great [cea-2.8], since the last time in mid 2015, when they found and treated HPV. I view my Onc. as a very cautious, and rather remote individual, but at least he's erring on that side of things. Hoping your husband gets the care he needs......................................Dave

Ruthmomto4's picture
Ruthmomto4
Posts: 624
Joined: May 2013

does he still have his tumor in his colon or was it resected? If it hasn’t been  it could be the cause of the bleeding. I hate that you are going through this, I hope changing doctors is helpful. It was the best thing we ever did. 

Twinzma
Posts: 207
Joined: Jan 2018

Yes he still has his tumor. To wit several doctors have now asked at the hospital why it hasn't been debunked yet. When he asked his oncologist again, she brushed it off and changed the subject to his bowel movements again....Alrighty then! 

I was wiped out last night and couldn't come back to add that at 10pm they came in asking for another stool sample with the hat. He was furious to say the least. Said that he is signing out AMA and just wants to get home and back to the office. The nurse did not say why they want to re-culture it but I can only assume that something may have shown positive in the first and they are confirming it with another one. I haven't been around cancer patients enough to say for certain but from working with the elderly and in a GP's office years and years ago we would run secondary cultures to confirm C-Diff... Which would make all the sense in the world the blood, fever, diarrhea, weakness the high WBC, Even the change of odor. Not that I would want it to be something like this, it kind of would be a relief to know for certain the source if you know what I mean. C-dff is serious in chemo patients and those with weakened immune systems even healthy people have a hard time with it as once you have it...it's so much easier to get it again. ALL along I wanted him to be on a good probiotic for gut health and his oncologist said no to that. I don't know, I just want him on the mend to get him to someone else with a new set of eyes AND better communication skills. He spiked another high fever last night (103) and just called to tell me he is freezing with chills so I willing to bet he's feverish again. Grabbing my coffee to heading back up to the "hell hole" I call it. This hospital isn't the finest in the area, seriously needs a renovation. Shoot should just be demo'd but that's a whole other story! Thank God the Infectious Disease doctor kept him yesterday....I can't imagine having to had taken him home had him spike that fever on my watch and not known what to do or how to get him back there because he would have refused to go.

Ruthmomto4's picture
Ruthmomto4
Posts: 624
Joined: May 2013

that makes me crazy is just because someone has cancer doesn’t mean every single thing wrong with them is cancer. I have run in to this often with my husband. I hope it’s not c diff! Don’t apologize and update when you can.

Trubrit's picture
Trubrit
Posts: 4781
Joined: Jan 2013

Twinzma, don't ever apologize for any of your posts.  

Right now, you need our support and we are here for you. The time will come when you will be in the place to support others, but it is not now, and we totally understand that. 

I do so hope that things improve, and soon. 

God bless!

Tru

Twinzma
Posts: 207
Joined: Jan 2018

I am just that type of person that hates to be so needy. I am so used to being the grounded one, the one that is the calm in the storm....I really need to adjust my ways I suppose so I don't worsen my depression. I have to work on being that type of person that is okay with "Jesus take the Wheel"....yeah this is NOT going to be easy for me to learn to do! Thank you honey, for your well wishes and for being there. From the fist time I signed on here you have been so supportive and wonderful to me! You are a treasure and a God send! 

Kazenmax's picture
Kazenmax
Posts: 342
Joined: Feb 2016

Rough is an understatement!! You guys have really been through it!

I hope things settle down soon. I don't know what hospital you are going to... Is there somewhere else you can go? 

I understand your frustrations. Hang in there. Sending love and strength to you both.

K

Msboop15's picture
Msboop15
Posts: 80
Joined: Apr 2019

i hope things are looking much better for your husband. 

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